Stories about our son Ben, his disability and our family. Ben is 10, loves stories and is physically disabled. I am learning to be his ally.

Month: September 2018

We survived the summer holidays! Nothing brings home the fact you have three children like having them all at home for six weeks . It is inevitably chaotic and puts all other meaningful activity on the backburner, but it’s also fun. We don’t all have to be up and out first thing in the morning, remembering school forms and PE kits. We can go to new places and hang around in the garden.

The secret to communal happiness for us (me) is to have some structured activities, ideally not involving me, lined up between the museum outings and home-based craft projects. We are fortunate that Ben’s school runs a two week playscheme in the summer, and even more fortunate that we have funding for him to attend for one of those weeks. We pay for him to go for a second week.

Running a playscheme for kids like Ben is not straightforward – you need a suitable building, loads of staff with the right expertise. They are expensive because the ratio of staff to children is high, which means either schools or councils have to subsidise them or they are prohibitively expensive for parents. As a parent, it is difficult to find any holiday activities for our disabled child where we feel confident leaving him in a new place with unfamiliar people. I will only send Ben to this playscheme because it is at his school, staffed by people who work there so know him well – these are people who are used to feeding him through his tube and can communicate with him. It’s not the closest holiday scheme but it is the most appropriate.

So for the last few school holidays Ben has spent a week at this playscheme, which is exactly the kind of age appropriate, fun holiday activity I’m into. What I’m even more keen on is the typical experience of two brothers who are a couple of years apart in age being able to do the same holiday things, at the same time, and that is exactly what this playscheme offers. They welcome non-disabled siblings so this year Max went with Ben for four days.

Hurrah, we all shout! Except (and isn’t there always an ‘except’) we need to work out how to get them to and from a playscheme that is five miles from our house each day. Ben is theoretically provided with transport to do the morning journey for one week, but all of my emails to confirm this have gone unanswered and in the week before the playscheme, I still have no confirmation whether the bus is coming and if Max will be allowed on it. There are some mutterings about insurance (or lack of it) for Max. As always, I eventually call my contact, Ms A, at the private transport provider who are sub-contracted by our local council to take Ben to and from school during the term. She works her magic, and calls me back the following day to say she has confirmed the crew that usually take Ben to school will be there on Monday morning, ready to take Max and Ben.

I cannot overplay the value of Ms A. After weeks of me emailing and calling social services and the school transport service (as I do in the weeks leading up to every playscheme) and getting precisely nowhere, she smooths the path and makes it work with a driver and escort who are familiar to Ben, and with enthusiasm for Max joining them. People like Ms A are the ones who brighten my days.

And so off they went! Ben went on his own some days, and Max joined him on others. They swam in the hydrotherapy pool and did some DJing. They made spiderman masks and puzzles.

One day I collected them and a young woman was accompanying the boys down the corridor towards me. I could see they were relaxed and happy. She introduced herself and then, in a low voice so Max couldn’t clearly hear, said what a great brother he was. That he’d been friendly to everyone and helpful to Ben, that he’d made some funny jokes. She said her sister had gone to the school and that was how she had got into helping at playscheme. She seemed like exactly the kind of person I want my kids to hang out with.

This is unusual – it is not standard to have access to a playscheme where you feel really confident people understand and can care for your child, where they will be happy and safe. It is rare for non-disabled siblings to be allowed to join in with these kinds of activities. It is unusual to get funding for a week which includes help with transport to get them there. In fact, in a stunning display of bureaucratic madness, a classmate and friend of Ben’s went to the same playscheme each day but for some unfathomable reason was not allowed to travel on the bus with him. Ben’s bus went past the end of his road each morning without being allowed to pick him up, despite there being room. It was the same bus and crew that normally picks him up for school every morning. I despair.

After two weeks of Max and Ben spending time doing all of the fun the playscheme had to offer, we were ready to spend more time at home. I geared up to organise trips. We did loads of interesting things, but I worked hard. It takes thought and planning to find activities that work for a disabled eight year old, a six and a two year old. Holidays are fun but intense, which is exactly why a playscheme like ours is so valuable.

There is a temptation to see such playschemes as a luxury but there is literally no other holiday scheme, club or session that Ben can go to without me or a carer. It is entirely appropriate for an eight year old to spend parts of his holiday without his mum, and to have the opportunity to do different things. It’s a crucial part of growing up.

From my perspective it’s brilliant. Ben said that he enjoyed it, and Max asked if he can go every day with Ben next year. I hope so, my boy, I hope so.

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